My signifacant other of many years has been diagnosed with ESLD.

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estabr3333
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Date Joined Aug 2010
Total Posts : 42
   Posted 8/28/2010 9:09 AM (GMT -7)   
My 45 year old boyfriend was diagnosed back in June with ESLD. It has been a very long couple of months. He has severe Ascites and has been hospitalized for blood transfusions due to bleeding from Gastric Varices and for an E-Coli infection in the fluid he is retaining as well as in his bloodstream. He is on diuretics, blood pressure meds, lactulose. folic acid and thiamine. He also has Cipro that he now takes once a week to prevent another infection. He was drained for the first time in the ER at the beginning of the month and they took off 8 liters. This is also when the E-coli infection was diagnosed. He ended up in ICU for 2.5 days after the draining because his blood pressure dropped so low. They did give him Albumin right away after the draining, but it did not initially help much. He continued to recieve several bottles a day for the next 4 days while in the hospital. He was sent home with instructions to make arrangements to get drained on a weekly basis to help prevent another infection due to all of the pressure on his intestines. After jumping through some hoops to get this set up ( he did not have any insurance and had to apply for medicaid which has since been approved ) he is now scheduled for weekly trips to the hospital to have this done. They check his INR the day before each procedure - the last one was 1.84. The doctors at the hospital - mostly Internal Medicine DR.'s - have been very negative about his prognosis. His new primary doctor seems more optimistic, but doesn't seem to have much experience with all of this. He seems to rely on the directions from the DR.'s at the hospital. For example I made an appointment to see his primary the day before we ended up in the ER again because of a recurring fever, increasing weakness and a noticible increase in ascites. I thought his hemoglobin was getting low again and that maybe he needed another blood transfusion. The doctor tested his hemoglobin ( upon my request ) and it was better than previously. He had gained almost 10 lbs however in about 1 week. The Dr. said the fever was normal as the lungs were trying to compensate for all of the pressure on them. He increased his diretics and sent him home. the next afternoon after coming home from getting his new prescriptions, he was burning up and had a 102.4 temp. Off to ER we went - this is when the infection was found and they initially drained him. It also took over a week for his Dr. to figure out how/where to set up the weekly drainings. Hoping for some input  on what to expect for our future. Thanks for any knowledge you may have to share

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 8/28/2010 11:49 AM (GMT -7)   

Estabr, welcome to the forum!  I am so sorry that your significant other has been diagnosed with liver disease.  It is important to know what caused this.  Alcohol, hep C, autoimmune hepatitis?

The first thing he should do is to get a referral to a hepatologist (liver specialist.)  Even GI docs don't have the expertise that hepatologists do regarding liver disease.  You don't say where you are located.  I know that some states are sorely lacking in these specialists.

I am not very impressed with the new primary care doc.  A fever is never "normal," but is an indication of infection somewhere in the body.  However, I know that few primary care docs will accept Medicaid, so it may be difficult to find another one in your area.  In general, primary care docs don't know much about liver disease.

Also, weekly drainings are dangerous.  Those alone expose him to infection.  Make sure he always gets the albumin with them.  He really should not be getting them more than every two weeks.  A TIPS procedure is something to be discussed with his GI docs and his hepatologist when he gets one.  While this carries some risk, it also eliminates the drainings and ascites.  If he is on Lasix alone, he should also be taking a potassium pill.  Usually, Aldactone will be prescribed along with Lasix.  He should be following a low-salt diet to prevent fluid retention.  He might also be placed on fluid restriction.

Has the possibility of transplant been discussed?

I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources.  (It deals with liver disease, not just hepatitis.)  That will give you an idea of what to expect.  Also read some of the older posts for information.  Do a search for ascites, infection, ESLD.

If you have any specific questions, please feel free to ask.  Someone here should be able to answer them.

Finally, this is a very stressful disease for caregivers to deal with.  Please don't forget to take care of yourself.

Hugs,
Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 8/28/2010 12:53:24 PM (GMT-6)


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/28/2010 12:05 PM (GMT -7)   
One day at a time... you're going through a time warp... gonna have to grab a lot of knowledge in a fast hurry... and make decisions.. make sure that you get power of attorney and a medical directive set up right away... this seems very early on maybe... and I felt really icky when Mike and I did this... and I never pushed as far as a will which I wish I had... and there were some questions that we never talked about but I made decisioins for when he couldn't that I wish I had asked... this is very important... but these things were vital when it came down to it... and empowered me to make the decisions....
all that said... one day at a time ... one step at a time..
There is no pit so deep that He is not deeper still... Corrie Ten Boom

estabr3333
Regular Member


Date Joined Aug 2010
Total Posts : 42
   Posted 8/28/2010 1:56 PM (GMT -7)   
Thanks for your replies. His ESLD is from alcohol. He is on Lasix 40mg a day, aldactone 100mg a day and propanolol 40mg a day. Also sodium and fluid restricted diet. Just got approved for the medicaid so I planned to try and get a referral to a liver specialist. His primary seems to be a good Dr., just not experienced. Have heard that he won't qualify for transplant since he just stopped drinking when this all came on. Everything has happened so fast. He had not been feeling well off and on for a month or so. Then his belly grew so large over a week's time. Because of his drinking, I investigated liver damage online and got him into the emergency room where they did CT scan and blood tests etc.. They confirmed it was his liver and set him up with a primary Dr ( did not have one due to no insurance ) to treat him. I read about possibility of Varicies and infections and then boom first the varicies and soon after the infection. It just seems to be going so fast. I know that the liver can regenerate itself - but how do we know if or when it is?
estabr

arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 8/28/2010 3:30 PM (GMT -7)   
well I don't have answers for the liver regeneration and haven't heard of any after ESLD diagnosis... but you need a hepatologist on this.. and he needs to go to AA to document his sobriety.. it's not that he doesn't qualify in the future... and the key is documented sobriety usually through attending AA... and needs to be documented thoroughly...he just needs to have been sober for a period anywhere from six months to a year is typical...the TIPS operation gave Mike 3 1/2 years of a pretty "normal" life until he binged again.. after his brother died... then it was all down hill from there.. these drainings are not the answer to the fluid longterm due to the risk of hitting the wrong organ.. or spreading infection.. and some places are not good at doing them... and this in itself can be life threatening in the hands of the wrong person..but this the place for the info and support.. we'll be here.. for you... ask away... Sandi prayers and thoughts are with you
There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/28/2010 3:37 PM (GMT -7)   

It will take a while for his liver to regenerate.  Also, he undoubtedly has cirrhosis (which is scarring of the liver) and the part that is damaged will NOT regenerate.  I'm so glad he has stopped drinking.  That's the very best thing that he can do for his health.  The danger is if he starts feeling better and drinks again.  That could spell disaster.  In order to be evaluated for a liver transplant, he would need at least 6 months of documented attendance at AA or alcohol counseling (depending on the transplant center.)  When he is stabilized somewhat and starts feeling a little better, he really should attend AA.  He can make up some sort of form to document meetings he attends and the dates, to be signed by the chairperson.  That and blood work should suffice.  That way, if he needs a transplant in the future, he will have that solid attendance to back him up.

Yes, when things start happening they happen FAST.  Be sure to get copies of all his CT scans, blood work, etc.   Sue can tell you about the infamous 3-ring binder.  This can be invaluable if he has to go to the ER, and also in tracking the progression of the disease.  Keep a watch on his BUN and creatinine levels to make sure his kidneys aren't going bad, too.

You will receive a lot of information here, although you seem to have done a good job on your own thus far.  You will also have a lot of empathy and support from folks here who have been or are in your shoes.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 8/30/2010 2:59:43 PM (GMT-6)


estabr3333
Regular Member


Date Joined Aug 2010
Total Posts : 42
   Posted 8/28/2010 7:45 PM (GMT -7)   
Thanks Connie and Corrie - just having someone familiar with all of this helps sooooo much. All of his family is out of town. They are a very caring family and come to visit, but I'm pretty much on my own to get answers from the Dr.'s and try to explain to them as good as I can. As he's the "baby boy" even though I try to talk to them, I can tell they really aren't fully listening because they just want to hear that his liver is getting better and that he will be OK. Of course he wants to believe that too and doesn't want them to worry about him so he tends to sugarcoat things when he talks to them.

I have a legal pad that I have started keeping track of things with. I started it for applying for SS disability. The worker said we should have an answer within 30 days as his case has been classified as a TERI case. Fortunately, the medicaid and disability issues are moving along quickly too.

His doctor did mention the TIPS procedure as a possibility when we were there to get the weekly drainings finally scheduled. I did read about it online also as well as the risks of the drainings. Both his primary and the GI doctor at the hospital were against the drainings because of the risks and the fact that they are a very temporary "fix". Have only been twice so far - 1st time they took 4 liters, last time 4.5 liters. He feels better only for a day or two. He's been faithfully taking his meds and doing very well with the sodium and fluid restrictions to his diet. Although the fluid keeps coming back - it seems to build up a little slower the last couple of weeks.

One doctor did mention cirohhis but then another just referred to alcoholic liver disease. No one has given us an definitive answer as to the real extent of the damage to his liver. Hopefully this week I can get a referral to a liver specialist and get some better answers.

Thanks again for your help and support !

Diane & Dave

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/28/2010 10:19 PM (GMT -7)   

I believe that was Sandi/Arneeb who answered you above, in addition to me.  Anyway, it does seem that you are very much on top of things as far as investigating liver disease, TIPS, etc.

Has he ever had a liver biopsy?  That would definitively show the extent of damage.  I don't feel that it is doing the family any favors to "sugar-coat" things for them.  At least one of them should really know what is going on.  He very well could recover, but at this point he is a very sick man.

Take care and continue to keep us updated.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/29/2010 5:01 AM (GMT -7)   
When we finally did apply for Social security... it only took 45 days... we waited until he hadn't worked for quite a long time... just keep on keeping on... that's all you can do... I hope you have someone... I had no one... and all the way through the end of our journey together this is where I came for support and is where I remain... but the TIPs greatly improved Mike's life quality.. and added 3.5 years....thoughts and prayers are with you... Sandi or Corrie if u like...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/29/2010 11:30 AM (GMT -7)   

Sandi, the problem with waiting to apply for SSI/SSD is that they pay from the time one applies...not from the time one stops working.  So you would be losing out on all that back pay if you wait.  Since estabr's b.f. was noted to be TERI, his case should be approved fairly quickly.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

estabr3333
Regular Member


Date Joined Aug 2010
Total Posts : 42
   Posted 8/29/2010 12:17 PM (GMT -7)   
Soooo sorry Sandi !! I have only just started on this forum, but have read quite a few postings and have learned much. I have lots of people to talk to, but not any that really understand all of the medical stuff.  Number one question is always is his liver getting any better and/or when will we know. I've just adopted a standard answer that we don't know yet if it's getting any better and that we just have to wait and see what happens.
 
We live in Michigan and it is a requirement of his medicaid approval that he apply for social security disability. He has only actually been off from work since July 5th. Yes Connie - the lady from disability said that we should have an answer within 30 days because of the TERI classification. He has not had a liver biopsy done yet, but the disablilty lady also mentioned that may be a possible requirement for approval.
 
Once again - thanks for your replies. It really helps having someone who understands things.!
 
Diane & Dave

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/29/2010 1:11 PM (GMT -7)   

Diane and Dave, that sounds like a good standard reply...and true.  It takes time to know whether his liver will recover and how much.

All of us here are pulling for you!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

bijoo
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/29/2010 11:54 PM (GMT -7)   
Hello estabr, Connie, and all. New here.......:)
 
I was diagnosed with alcoholic chirrosis 7 years ago.  The GI Dr. I was referred to told me you have two years left to live and that was it. 
 
I found another Dr.
 
I guess what I want to impart to you is that there is always  hope, and I made an amazing comeback.  I was in ICU a few years later and nearly dead, then in the hospital on and off so many stays that year.....so I know how horrible this is.
 
I am on most of the meds you mentioned.  I hope your friend is also taking Lactulose. The effects of Lactulose are unpleasant, but it is crucial.
 
The acites drains are important, definitely. But from what I know a weekly drain if it is that severe is never going to be a good thing. So much danger in poking a hole into the gut.  Look into a TIPS. ( Transgugular Intrahepatic Shunt) Mine was done two years ago and worked wonders. No more pain from that pressure.
 
 You might want to watch out for his footies....alcoholic neuropathy. I had to re-learn walking safely. This might sound weird but it could be important. Falling is as deadly as anything.  
 
estabr, you sound really pro-active.  I hope you are taking care of yourself.
 
Ask me anything and Godbless----------Mary 
 
 

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/30/2010 4:21 AM (GMT -7)   
OH no I wouldn't recommend anyone wait to file... that's just how it happened for us... sounds like ur on top of things estabr... stay tuned... we'll be right here... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/30/2010 11:38 AM (GMT -7)   

Mary, welcome to the forum and thank you for your input!  Glad to hear that you are doing so well now.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 8/30/2010 1:17 PM (GMT -7)   
Diane, Get yourself a 3 ring binder and request all test results be printed for you for any Dr he sees. Keep all medical insurance info and prescription info in it too. Keep extra copies of med list and dosages so when needed you just hand over a copy, leave nothing to memory. I even had all Dougs pictures from scopes as he had a tumor that was being monitored. I learned every side effect of every med. I kept every admission sumary and discharge summary as we were dealing with 2 hospitals and multilple Drs. It helped when dealing with ERs, Drs and home care people that were in and out of home to help! Less mistakes and screw ups, I even required everyone who helped me so I could work to leave me notes in another binder even if it was to say he had a good day with no issues. I wish you both the best , as a caregiver I do want to say learn everything you can but most of all take care of yourself.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/30/2010 2:01 PM (GMT -7)   

Sue, sorry I attributed the use of the 3-ring binder to someone else.  I've corrected that post.

Thanks for your help, as always.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/30/2010 2:33 PM (GMT -7)   
wow Sue I'd think I trained you to work in our adult foster care setting... yes a binder for anyone that comes in to work helps... but specific info too... descriptive... also... a sheet tracking all dr appointments .. results... and follow up appointments.. a calendar on top with a listing behind... for a section in your 3 ring binder... copy of all medical insurance, medical directive, power of attorney etc in a plastic sheet in front so that you can remove easily... I took Mike's right out at the ER the day we went in... came in handy... keep the binder with every time go anywhere...I felt pretty goofy but it sure came in handy..we use this type of system where I work so adapted some of the ideas here... and made my own..

estabr3333
Regular Member


Date Joined Aug 2010
Total Posts : 42
   Posted 8/31/2010 7:26 PM (GMT -7)   
Hi all,
Thanks so much for your thoughts and advice. Went for weekly INR test today for getting drained tomm morning. He's pretty swelled up again. This is our 3rd routine parencenthesis (spelling??). Took off 4 liters 1st time and 4.5 last week, not sure about tomm until we get there. They do use an ultrasound to make sure they don't hit anything they shouldn't which makes me feel a little better about the whole process.
 
I haven't gotten a binder yet to keep track of everything. Have my legal pad and my calender still, but plan to convert to a binder asap. Having everything in one place will make things much easier/useful. Thanks all for the tip !
 
Mary - It is great to hear that you have/are doing so well ! Optimism is a beautiful gift - Thank You !
 
Diane & Dave
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/31/2010 8:55 PM (GMT -7)   

Diane, I still maintain that weekly drainings are dangerous!  Try to find out if they can be stretched to every 2 weeks.  And remember he needs the albumin, too!  It does make me feel better to know they are using ultrasound guidance.

Also, remember to get that referral to a hepatologist!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

estabr3333
Regular Member


Date Joined Aug 2010
Total Posts : 42
   Posted 9/6/2010 7:48 PM (GMT -7)   
Hi All,
Hope everyone had a good Labor Day weekend !

Last week's draining went well, but they took off 6 liters this time. It's time to go again tomm. I guess that I have some mixed feelings about these drainings Connie. I know that they are dangerous, but they are using an ultrasound to avoid hitting anything that they shouldn't. But I also know that without them, he could end up with another e-coli infection because of all the pressure that the fluid puts on his intestines and stomach. It seems to be 6 of one and half dozen of another with the risks invoved.

Just don't seem to be making any headway with the fluid retention. Each week thus-far he seems to be retaining as much as they are draining each time. Even though they've drained more each time, obviously there is still a lot left. When they drain more, it just makes him a little more comfortable for a day or two, then it's back to the same ol - same ol.

Working on the Hepatologist referral still. Doesn't appear that there are any locally, but we are not that far from Grand Rapids and I am sure there are some there. Plan on calling his primary tomm and will see what we can figure out. Also waiting/hoping for a call from SSD tomm. They mentioned a Liver biopsy may be required for appoval, which I assume would be through a hepatologist's office.

Thoughts & Prayers to All !

Diane & Dave

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/6/2010 8:27 PM (GMT -7)   
Diane,

While you are working on the hepatologist referral, give some thought to calling his insurance company. I see you are waiting on SSD, so not sure if he has insurance right now. However, if SSD will require a biopsy to approve, perhaps your primary doc (if you have a good relationship with them) would be willing to order that to get the ball rolling so to speak and you don't get caught in a loop. It's an outpatient procedure, done in the radiology lab so should not be a major roadblock to go ahead and at least get it ordered to document.

I wish you the best in finding a hepatologist, and your process with SSD.

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/6/2010 8:36 PM (GMT -7)   

Diane, a GI doc can do a liver biopsy.  My first one was done by a gastroenterologist.

If you could get him hooked up with a hepatologist, you could discuss the TIPS procedure.  It seems like this would be something warranted in his case, but the risks would need to be considered.

Please continue to keep us updated on Dave's progress.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

estabr3333
Regular Member


Date Joined Aug 2010
Total Posts : 42
   Posted 10/18/2010 7:12 PM (GMT -7)   
Hi all,
Been a while since I posted. I've been here reading though. Tomm morning we go for out 10th week of scheduled drainings. I guess I am nervous. Overall, I guess it has been going OK. No trips to ER for over a month !! The thing that worries me right now is his blood pressure. He is ( has been ) on BP meds and diuretics. When they do the drainings he gets albumin but his blood pressure is so low - sometimes in the 70's over the 40's - I get so scared. Each week they have been taking an average of 7-8 liters. At first, seemed to be making some progress but the last 2 weeks he has gained more than what was drained. Last week they took a little under 7 liters because the tube fell out and the nurse was concerned about his blood pressure is what he told me. I asked him what it went down to and according to him it was "about the norm" of when he has the draingings. Then we recieved a call from his PCP's office at almost 6pm on friday night. The girl said that his doctor doesn't want him to continue with the drainings because of his blood pressure. We already had/have an appt next monday to see him and get latest blood work results. He said that Dave can get the scheduled draining tomm. but we will go over all next week. We talked to him about the TIPS at our last appt. and he was going to make some calls and see wht he could find out. Don't know what the "qualifications" are. Also David is concerned about the complications - of which I am not sure. Biggest question is - because the liver is being bypassed - how is the blood getting filtered and how does it effect his amonia level ?
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/18/2010 8:19 PM (GMT -7)   

Estabr, it's good to hear from you.  First of all, I'm surprised that nobody has suggested stopping (or at least decreasing) the BP meds for the day before and/or the day of drainings.  That would seem to be common sense.

Regarding the TIPS procedure, the liver would still be filtering toxins.  They are just creating a shunt in the liver between the portal and hepatic veins.  Creation of the shunt decreases the portal pressure and diminishes the ascitic fluid.  Being drained every week is nearly as much of a risk as the TIPS.  So I hope his doctor will learn more about this.  Is your SO seeing a hepatologist?  I think the management of his liver disease is really beyond the scope of the PCP.

Hugs,
Connie
 
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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